Good deliberation Raymond De Vries Center for Bioethics and Social - - PowerPoint PPT Presentation
Good deliberation Raymond De Vries Center for Bioethics and Social Sciences in Medicine University of Michigan Medical School Ann Arbor, Michigan If the principles of deliberative democracy were to be more fully realized in the practices of
Raymond De Vries Center for Bioethics and Social Sciences in Medicine University of Michigan Medical School Ann Arbor, Michigan
If the principles of deliberative democracy were to be more fully realized in the practices of bioethics forums, the decisions the participants reach would be more morally legitimate, public-spirited, mutually respectful, and self-correcting.
Volume 27, Issue 3, pages 38–41, May-June 1997
F23: I can understand why you [support the use of surrogate consent], but I think when you get to individual scenarios, you have to really stop and think...Is there going to be a scenario where the risk is so high that we would not as a society ever want to have a surrogate make a decision? . . . Now let me finish. I can see you’re trying to answer me, but really think about this...Are we ready as a society to say, “Okay. It’s okay to have surrogate consent for a relatively high-risk scenario...” You might be willing to push yourself in a higher risk scenario than you might be as a surrogate. M20: This is not an argument. This is an exercise from my
there was low risk in research, do you feel that society should let you make that decision if I couldn’t? F23: Yes, yes.
M20: ...Let’s take it up another notch. I’m the Alzheimer’s
risk involved in the research...Should society allow you, my wife, to make a decision regarding my participation? F23: See, that’s where it gets fuzzy for me because... from a societal point of view, ...it would have to be that proper risk- reward ratio, and I think that would be up to societal debate.
F23: I can understand why you [support the use of surrogate consent], but I think when you get to individual scenarios, you have to really stop and think...Is there going to be a scenario where the risk is so high that we would not as a society ever want to have a surrogate make a decision? . . . Now let me
about this...Are we ready as a society to say, “Okay. It’s okay to have surrogate consent for a relatively high-risk scenario...” You might be willing to push yourself in a higher risk scenario than you might be as a surrogate. M20: This is not an argument. This is an exercise from my
there was low risk in research, do you feel that society should let you make that decision if I couldn’t? F23: Yes, yes. Civil disagreement Societal point of view
M20: ...Let’s take it up another notch. I’m the Alzheimer’s patient. I cannot make a decision on my own...There is high risk involved in the research...Should society allow you, my wife, to make a decision regarding my participation? F23: See, that’s where it gets fuzzy for me because... from a societal point of view, ...it would have to be that proper risk-reward ratio, and I think that would be up to societal debate. Societal point of view
Scott Y. H. Kim Amy Stanczyk Ian Wall Rebecca Uhlmann David Knopman Paul Appelbaum Kerry Ryan Laura Damschroder Michele Gornick Susan Goold
(National Institute on Aging: R01AG029550)
Scholars Award in Bioethics to Scott Y.H. Kim
G13LM008781
Survey 1 Survey 2 (post-deliberation) Percent agreeing with policy to withhold findings regarding adult 11.0 43.1
Χ2 = 4.71, p < 0.001
…is at the table? [representative]
…information is provided? [free from bias]
17-item knowledge questionnaire* Mean (95% ci) Survey 1 (pre DD) 11.5 (± 2.6) Survey 2 (post DD) 14.5 (± 2.3) p < 0.001 Survey 3 14.1 (± 2.6) p < 0.001) (after 1 month)
*Level of knowledge about AD (prevalence, risk factors, course of disease, treatment options), purpose and types of clinical research in AD, ethical regulation of clinical research, and current policy regarding surrogate consent for clinical research.
F39: Requiring research advance directives would be ideal, and
more education might bring more people to do that, but in reality, it’s a very small percentage as far as how many people actually go through . . . Everybody knows they should have a will. Everybody knows they should have a durable power of attorney, but very few people . . . percentage might have it.
F35: Like if you’re donating an organ, you already know exactly
what you are going to be doing and you’ve weighed the ethical question out. I think [the expert] is saying that when it comes to research, you don’t know what they’re going to be doing, and so you don’t know if you would have agreed with it ethically or not.
Surrogate based research:
[Using information] [Using analogy]
I don’t know . . . I kind of feel like that with all of this, there’s so many unknowns and the degree of this or that is so unknown . . . Like why are we causing ourselves all of this stress? Like why don’t we wait maybe . . . I mean, I could also argue against what I’m saying too, but maybe we should just wait until we have a lot more information and then like now, just sort of do the pre- decision . . . “Oh, when we get to that point, let’s decide this.” But for right now, I feel like it’s like it could be catastrophic to have these sort of partial, maybes, ‘this could happen’, ‘we don’t know’. (ID-02)
Return of incidental findings:
[Impact of information on opinion]
(SBR)
(scale of 1–10 where greater number indicates more positive response )
M21: If your son’s death could result in saving millions
would love your son in order to give him up for others? M20: I don’t think I would be willing to offer my son or daughter to save millions, thousands. M21: My God did that. M20: Yeah. Well, I’m not God.
F44: ...the conclusion that I came away with is that if surrogate...consent does not become acceptable in this area, that there will essentially be no meaningful Alzheimer’s research. It seems like that would be a train wreck for our society. So it seems as though we almost have no choice but to have some form of surrogate consent...
F15: I look at the 6 out of 18 persons that have permanent
inflammation; 6 of the 18 had permanent problems— seizures, headache, vomiting. To me, that’s a little high risk, and I’m going to go with M14. I don’t think society should allow surrogates to make that decision.
Nagging questions
And what is the historical situation and social location of that “who”?
Why the shift from expert to public bioethics?
Does deliberation deliver public opinion?
The ideal:
The hope:
The real?
rdevries@med.umich.edu